I’ve been waiting for this. It’s like the building excitement of meeting someone you admire and you’re so excited, then you’re in a room with them, you’re still excited but don’t really know how to act. Also, I underestimated the complexities of building a website. I’ve spent the last several days beckoning my husband to my bed (my home) through the baby monitor in his office, or my voice amplifier. Sometimes both, which can be frustrating while on a business call. That only happened once. I try to wait until after business hours. Even though he doesn’t have standard business hours. Somebody calling him at 8:00PM should expect more background noise in my opinion.
My third issue is I’ve been feeling sick all this week. Dizzying ears stopped up feeling cramps and extreme fatigue. In true April fashion I’m complaining right out of the gate, and not even about ALS. Go figure, I’m just writing what is circling my brain, as is, just as I said I would. Back to my husband. He has come to me every time and I asked and would not be typing this if not for his help. Thank you, Tony. You get my first shout out. I love you! The other thing is I almost don’t, I said almost don’t feel like writing today after weeks of looking forward to it. It’s mainly because my hands hurt from typing so much. That homepage may not seem like much, but that was work. My diagnosis process took a lot of time typing, causing my hands and arms to cramp and even my back to flare up because of position. Not to mention it was emotionally difficult reliving it all.
So here I am on deadline day. Thrilled but in a completely sleep deprived state of exhaustion. My actual website is pretty much complete except I will be adding lots more information for my comrades and their caregivers. Considering this last week, it’s monumental what I’ve accomplished and trust me I don’t praise myself often. I am proud of myself. Also, I’ve spent the last few weeks on Twitter trying to make sense in 140 characters. That’s not easy for me. As you can see, I type what and how I’m thinking, and in the words I would speak it. I’ve always been anal about proper grammar and spelling. I’m going to try and loosen up about that within reason. Of course I only spot the mistakes after sending it out anyway.
My blog is just me talking, something I miss because my voice has become so quiet and my words are slurred because of tongue atrophy. So it’s like talking again for me. When talking I’m not thinking or saying, upper case here or semicolon there. I’m just talking. Of course I want to have a good reading structure that’s easy to understand, and after reading a few blog posts hopefully my personality will come through in a way that you get how and where my intonations are, where there is dry humor or when I’m being serious or a bit sarcastic.
This article was written by April